Policy responses and statements
- Name of organisation:
- Organ Donation Taskforce
- Name of policy document:
- Opt-out system of consent for organ donation
- Deadline for response:
- 31 July 2008
Background: The Chair of the Organ Donation Taskforce, Elizabeth Buggins, has written to invite the College to contribute views on an opt-out system of consent for organ donation which the Taskforce is currently examining in detail.
There is clearly a broad spectrum of views amongst the public and stakeholders about this issue. The Chairman has set out in annexes some key facts about organ donation in the UK as well as information about the Taskforce's First Report, which she hopes provides helpful background.
In July 2007, the CMO, Sir Liam Donaldson, published his Annual Report for 2006, On the State of Public Health, in which he called for action to tackle the present shortages of organs for transplantation. His recommendations included the need for legislation to be amended to create an opt-out system for organ donation with proper safeguards and good public information. The Taskforce was then asked by the Secretary of State for Health to see whether an opt-out system would increase the number of organs available for donation. An essential element of this was the views of the public and stakeholders.
In formulating its advice to Ministers, the Taskforce is keen to consider as wide a range of viewpoints as possible. It has already gathered the information included in the consultation letter, but is concerned to ensure that there are no points that have been missed or views that have not been considered before it begins to put together its report for Ministers.
COMMENTS ON
ORGAN DONATION TASKFORCE
OPT-OUT SYSTEM OF CONSENT FOR ORGAN DONATION
The Royal College of Physicians of Edinburgh is pleased to respond to the Organ Donation Taskforce on its consultation on an Opt-out system of consent for organ donation.
The College is fully aware that there is a considerable range of views on an opt-out system of consent for organ donation, and that the views of the medical profession are only one small part of this. The College has sought representative opinions from relevant experts in the field of transplantation, which are summarised here; all the contributors emphasise that they have given their own personal views - which even from this small and well-informed group, vary considerably from strong support to strong opposition. We feel the views of the public on this topic are paramount, and thus the most important task for the Organ Donation Taskforce is to present the correct and relevant facts to the public to assist the public to make the decision over the opt-out system of presumed consent.
We wish to make the following points in response to the Taskforce letter:
1 The gap between the supply of organs for transplant and the demand for suitable organs for patients waiting for transplant continues to widen, with a worse shortage in Scotland than other parts of the UK. The College strongly supports efforts to increase the availability of donor organs, both for current needs and for the predicted increased future demand.
2 The College supports the view that a cultural change is required amongst the public and the medical profession to make organ donation the norm rather than the exception, whilst continuing to recognise the importance of the unique altruistic gift contributed by the donor and their family.
3 The First Report of the Taskforce in January 2008 contained 14 recommendations which are likely to increase the number and quality of organ donations, and we strongly support full funding and implementation of these recommendations.
- The evidence that introduction of an opt-out system alone will increase organ donor numbers is not robust; high donation rates elsewhere in the world are not due simply to their presumed consent system but also to many other factors. The data from the Spanish experience clearly shows that much of the improvement in organ donation rates came from similar measures to those recommended by the Taskforce in their First Report, and pre-dated adoption of an opt-out policy.
5 We recognise that many individuals have ethical objections to the concept of “presumed consent”, which is not in fact consent. Furthermore, “donation”, entailing a decision to give, is not involved in an opt-out system where the only decision is not to give and, as mentioned in bullet point 3 (objections), many donors and recipients feel strongly that the “gift” relationship should continue to underpin organ donation.
6 It is not clear that a “soft” opt-out system will “remove the burden of decision-making from relatives at a difficult and traumatic time”, since “relatives’ views will always be sought” and donation will not proceed in the face of evidence that the deceased had objected, or if the relatives object - as is the case with the current system.
7 It remains essential to avoid any potential conflict of interest; firstly, by separating the end of life process from any discussion about organ harvesting and secondly, although we fully agree it is important to eliminate any financial disincentive to Trusts from organ donation, it is equally important that there should be no possibility for financial profit for a Trust from harvesting organs.
8 The consequences of errors in opt–out systems, when organs are mistakenly transplanted when the donor did not wish their organs to be used, are potentially very fraught, and are not symmetrical with the consequences of failing to observe a wish to opt in. An opt-out system will require a national database which is 100% effective, replacing the current donor card system - and we are concerned that previous and current NHS IT systems have not achieved these levels of accuracy and reliability.
9 Costs of changes in legislation and extensive publicity and information campaigns are likely to be extremely high; a pragmatic view, therefore, would be to delay any decision to change the existing consent process until the effects of implementation of the existing Taskforce recommendations are reviewed. This was the conclusion reached at the Royal College of Physicians of Edinburgh Symposium on organ transplantation held on 9 June 2008, when considerable time was devoted to discussion of this topic. The meeting agreed that the best use of limited and finite resources would be to fund the existing Taskforce recommendations to provide the support and infrastructure necessary to maximise donation rates, and review the outcome before moving on to the more problematic issue of altering the consent process. (Several contributors, however, believe strongly that an opt-out system will still be required to maximise organ donation.)
10 One further option for donation, which is not discussed in the Taskforce document, is that of “mandated choice”, which requires all adults to express their wishes regarding use of their organs, for example through the electoral roll or when registering with a general practice. The choice would be to consent to, or refuse, use of organs after death for transplantation, or to refuse to be registered, or to leave the choice to the family. This option would also require well informed debate, education and publicity but might ultimately result in a clearer legal directive.
Copies of this response are available from:
Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.
Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939
[31 July 2008]
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